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The other side of chronic pain

I write about pain a lot. I wouldn’t be much of a chronic illness blogger if I didn’t. But in the last nine weeks, my body has been through the worst flare I have ever experienced. I have spent 74 days stunned to silence by the amount of pain in my body, whilst similarly marvelling at the amount I’ve been able to carry on as normal, despite everything being so much more difficult.

When my chronic pain symptoms flare, I often turn to the blog and write about all the feelings. I talk about sharp pains and dull aches, numbness and hypersensitivity, migraine and vomiting, but I rarely focus on all the other things that accompany physical pain. Now I feel like adjusting the spotlight and writing about the other side. Sadly, pain tends to dominate everything and so I haven’t been able to write for about two weeks – and this post has taken me about a week to put together.

When you’re living in a world of pain, there are certain things you do to get by. You cut corners wherever possible to make the day that little bit more manageable, and you indulge in the things you know will help. Over the past two months I’ve spent obscene amounts of money on taxi fares to avoid unnecessary walking or public transport; I’ve bought thermal leggings and long sleeve tops to try and protect my skin from rough textures and keep my bones warm; and I’ve had two aromatherapy massages to give my body a little TLC in dark times. In short, a flare up is expensive. I dread to think how much harder it must be for those who can’t afford a taxi or an indulgent massage.

In the last two months I’ve also drunk more wine and bought more comfort food, I’ve stopped any small amount of exercise I was previously managing, and all the things I know I should do have gone straight out the window as I just stick to the basics to get by. I’ve gained some weight and my skin’s deteriorated; I feel like it’s glaringly obvious that I am unwell by the lack of colour in face, the lack of effort I can be bothered to put in to my appearance and the nervousness with which I carry myself – prepared for a painful nudge by a stranger or over-enthusiastic hug from a friend. But, from what I hear, no one has been able to notice anything different. From the outside, everything is the same.

I’m currently switching between three different medications, none of which are doing anything good. They’ve been responsible for my vomiting during a work meeting and vomiting on the underground (a new chronic pain life low), cancelling plans with friends and a full day in bed when I should have been eating roast dinner with my in-laws. At no point does this hellish concoction of meds dent the pain, but the ever-popular ‘let’s wait and see’ approach is advised by my GP.

I count myself incredibly lucky that I don’t suffer from depression alongside my flare ups. I feel slightly anxious about everything, but only in a slightly melodramatic sense – I worry a long day at work might result in my death. Something like that. It mainly makes me want to stay inside, wrapped up in a warm room of cotton wool balls until I feel strong enough to go outside again. Of course, that’s how I feel but it’s not what I do. What I do is get busier than usual, working in a different city one day to the next and making extra plans with friends every other day. Apparently I’m even more of a moron than usual when I’m in a flare.

Above the cost and the anxiety and the time spent with my GP, all of this is just exhausting and frustrating. Deep down, I know I’m not approaching it in the right way. Flares are a common part of the fibro cycle and as chronic pain patients, we’re used to them. Even so, grinning and bearing it and hoping it will pass is not the answer. We all know that. So today marks the start of a new approach; I will eat healthily, I will exercise mildly, and I will rest. I will rest at every given opportunity until my pain levels are manageable once again. If the meds happen to do their job during that time then, bonus.

Sure. I was actually thinking of doing a separate post on medication. I’m on amitriptyline and have been for years but I’m also trying lyrica (pregablin) – and tramadol for extreme pain. None of it’s doing much though. Hope that helps!

The one time I tried cymbalta I felt like I was going to die. My pcp neglected to consider I was also on a beta blocker and with knowing I am sensitive to meds started me on a “regular ” dose. Needless to say it was not a good outcome. And now I am afraid to try any medicine. So I continue to suffer daily with the pain. There has to be an answer somewhere to the pain.

I recently switched from Gabapentin to Lyrica. My foggy brain symptoms are doing better but my overall pain had been worse. I’m hoping my symptoms improve when/if my Dr adjusts the dosage. I’ve tried tramadol in the past with no luck. I use Percocet 5 mg for the pain. Some “experts” say that narcotic pain relievers don’t work for fibro but that is not true, in my opinion. It doesn’t kill the pain but it certainly helps.

I’m so very sorry you’re experiencing so much pain right now. I appreciate your posts. I appreciate that you give a voice to what we all experience but don’t talk about. I sincerely hope your fibro calms down soon. Very very gentle hug.

Im impressed that you can work. Ive been trying to find a job that I can do sence 2006 with no luck. I have so much pain that its hard for me to get up to go to the bathroom. Taking a shower is a huge deal. I have to take one 2 days before I know I have to go out. MD appt’s or something with my kids. Thank God they are all grown now. Keep up the work youre dong. I admire what you can do. So sorry its a bad time right now. I hope it passes soon.

Hi. I’ve just been searching through wordpress, looking for people that I can relate to… and I found your site. Love this post, especially the GIF, it’s funny because it’s true. I have RA so definitely understand chronic pain. ❤

I don’t know if this is the right section to ask this but I’ll take my chances anyway.
Hi Sarah, I just want to ask if you ever tried using cannabis for pain management? I am 35 years old now and been battling lupus for almost half of my life now. I have read many articles suggesting highly concentrated cannabis oil can be effective and alternative meds for people suffering lupus. Pain and inflammation are two commonly recognized therapeutic properties of cannabis, so its ability to treat lupus effectively is not surprising. Like this review on a Northern Lights strain from http://www.ilovegrowingmarijuana.com/northern-lights/. This plant has very high CBD and pain suppresing effect. I am very familiar with the high and physical effects of cannabis but I cant find any solid evidence that it will work. Let me also hear your thoughts or personal experience when it come with medical marijuana. Thanks Daniel

Hi Daniel, You can contact me in any section of the blog so don’t worry about that!

I did a fair amount of research on this a while ago, and to my knowledge there isn’t any solid evidence to show it will work. Some people report positive experiences so I’ve tried it a couple of times…

Hi Sarah,
I’m so sorry you have to deal with chronic pain. I too have dealt with chronic pain for 12 years now. I know how difficult it can be just to get through everyday tasks that would seem so easy to people without the pain. Please know you are not alone and I hope you find some relief soon!

Great blog Sarah, I’ve been having a bad flare up this week. I missed so many get togethers just this week I’m so frustrated! Sorry you are going through it 71 days that’s frikin long. I’ll keep all our pain sufferers in thought and prayers! Keep going warriors! Keep fighting against pain!

Thanks Susan. I wrote this one a while ago so thankfully out of the flare, but we all know they come and go so who knows when the next will be?! Hope your flare eases very soon, and that you’re able to socialise again soon. Sending gentle hugs!